THE OFFICIAL NEWSLETTER OF THE FHS SUPPORT GROUP
Stimulate Their Brains
As a teacher it amazes me how
the children who have spent
time putting together puzzles,
looking at pictures in books,
doing flash cards, or playing
with farm animals and making
animal sounds seem to excel in
the early years when it comes to
learning. It becomes very
obvious which parents have
spent time reading to and asking
their children questions, and
which parents have simply let
their children play for long hours
alone, or have let them sit for
too long in front of a television
or computer. While some
computer games and activities
can be worthwhile, they cannot
replace time spent with a parent
actively stimulating their brains.
More on this in the next issue.
Maxine, Age 9
Our daughter, Maxine, was
diagnosed with FHS when when
she was eighteen months old. She
just turned nine in August. She
was a very happy baby, although
she didn’t feed very well and did
awful on solids. He height and
weight dipped
from the age of
six months on,
and she dropped
from the 50th
percentile on the
growth charts
down to the
2nd. We were
referred to a geneticist who
diagnosed Maxine with FHS.
Over the next few years we
had a lot of help from professionals
within the teaching profession who
picked up very quickly on the
speech and communication issues.
It took a few years, but Maxine has
additional funding approved that
allows her full time
assistance in school.
When she began
school at the age of four
she couldn’t speak at all
except for a few odd
words. We had learned
Makaton sign language
when she was three, and that was
how we began communicating
with her.
Maxine stopped the signing
within a year of school, and has
progressed from there. Her speech
is not perfectly clear, but enough
for strangers to understand her.
She is way behind the others in
school, but is progressing well for
her abilities. She is very bright, but
has a really short attention span,
and bounds of energy, so it is hard
getting her to concentrate on
anything for a great deal of time.
She has an excitement and energy
for life that puts anyone to shame.
She is a true joy to those who know
her.
I suppose our main concern for
Maxine as she grows older and
becomes more aware that she is
“different”, is how to support her.
I have found the FHS
newsletters so comforting. I wish I
had asked for all the back issues
sooner. There are a few common
concerns that seem to come up
often.
Eyes - Maxine was born with
both of her eyes turned inward
(strabismus), and her corrective
surgery at the age of seventeen
months. She is still being
monitored by the eye specialist
who originally did the operation.
He did explain that her eyes will
never work “together”, but
separately, which will have an
impact on her depth perception.
As such, she has never been very
good at things like catching a ball.
Co-ordination/motor skills -
Maxine also struggles with riding a
bike. Initially it was a size issue,
but even as she is older now, she
doesn’t seem to get the “keep
peddling forward” idea. She does
love swimming as well as wall-
climbing.
Hyperactivity - I try and make a
point of taking Maxine for regular
“burn off” sessions at indoor play
centres; literally so that she can run
until she tires herself out. I used to
find this very helpful in the earlier
years. And even now I try and
make a point of some physical
activity (running, swimming) to
burn off excess energy. I have
found that, despite all the energy,
she is quick to tire in activities like
swimming. She struggles to make
the distance that others in her class
can.
Sleeping patters - This has
been awful for many years. She is
so clever at trying to procrastinate
going to sleep! And then she often
wakes up in the middle of the
night and sneaks downstairs to play
on the computer or watch TV. She
is not very happy when she has to
go back to bed, and often she will
not go back to sleep. She is
absolutely impossible if she’s had a
bad night.
Feeding/Eating - Maxine never
took to my feeding her naturally.
Even when I switched to bottled
milk, she could never drink more
than two ounces at a time. That
meant a lot of small feedings, or
otherwise it all came up. She has
never liked lumps in her food. I
initially got her eating yoghurt, as
well as mashed potato and
vegetables with cream cheese
mixed in. This is still one of her
favorite dishes. She adores pasta.
I can’t tell you the relief I had
when she finally started eating
sandwiches! She does love eggs on
toast for breakfast.
Nose and Ear Problems -
Maxine had her adenoids removed
about 4 years ago, and her speech
improved greatly overnight, as did
the drippy nose. She is still prone
to colds, affecting mainly her nose,
but they are much shorter lived
than before. Her hearing is good-
I would say that she has quite
sensitive hearing, often
complaining if something or
someone is making too much noise.
I do find if she feels poorly, she gets
temperature spikes which cause her
to vomit during the night. These
only seem to happen when she is
very hot.
Speech/Learning Makaton -
This was key for Maxine. Initially,
because she loved music and
nursery rhymes, she was taught
“Old McDonald’s Farm.” The
picture cards have also been
helpful. She has an excellent
memory and enjoys playing
memory games. She talks quite
well now. Her speech is nt
perfectly clear, but good enough
for most strangers to undertand.
Interests: Maxine LOVES
computers. Currently, Nintendo.
If she gets stuck with a game, she
goes to YouTube and looks the
game (where people have posted
tips and “walkthroughs”) and she
watches that to learn how to get to
the next part in her game. I don’t
know where she thought to do that!
School - Maxine attends a
mainstream school, but has full-
time support, as well as an
Individual Education Programme
with targest, which are reviewed
biannually. She has always
struggled with hand-writing. She
has been held back a year, but it
has allowed her to “git in” better
with her peers, even though she is
a bit older than them. They are
very accepting of her ways, and
miss her when she is sick or not
there. (They say it is very quiet!)
Growth - Maxine is monitored
by Endocrinologists who have been
very supportive and relaxed --
mapping her growth according to
her bone age more than her
chronological age. They didn’t
think Maxine would need growth
hormones. At our last visit she was
115 cm tall and weighed 22.5 kgs,
moving her to the 0.4th percentile.
She turned 9 this year and has
continued the growth spurt. She
has gone up two shoe sizes to a 10,
and and now fitting age 7 trousers/
age 8 shirts. I’ve had several
parents comment how she’s shot
up over the summer.
She is very sensitive to bright
light. We’ve never had her on any
medication for anything- an iron
supplement a while ago, but that is
it. We tried Melatonin to help her
sleep, but it made her REALLY
sluggish during the day. We didn’t
like the effect it had on her at all.
Behaviour - Apart from being
super- energetic, Maxine is happy
for the most part. She has a short
attention span. She has some
“wobbl y” days wi th
uncharacteristically aggressive
behaviour, but normally following
a bad night and something that
had upset her prior to the actual
incident. She is fearless, and
always has been, constantly
bruising herself by running or
bumping into things. She does like
to get hew own way, and can be
quite grumpy if she can’t. I am
finding, as she is getting older, that
her temper is getting much worse.
I am seeing tantrums like I ahven’t
seen for many years. This is quite
scary for me.
_______________________
More info on FHS is also available at:
www.floatingharborsyndromesupport.
blogspot.com Also available: A
collection of all 10 years of Safe
Harbor news-letters. $ for US, $40 for
all other countries due to postage.
THANKS
Many thanks to Sam
Hovell and the Jeff
Swanson family who
generously donated to
sponsor this issue of
Safe Harbor.
If anyone is interested in donating
toward this expense, you may do so
via Paypal to:
deana@floatingharborsyndromesu
pport.com
Jesse, 17, America
Jesse recently turned 17. He is
in high school. He is in a
regular science and history
class, and is doing 3rd grade
math and 6th grade language
arts. He continues to enjoy
cars and computers. He loves
to read and is learning
keyboarding and music theory
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